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She promised to remember the healthy "me"

When my doctor asked me "did you hear about Crohn's disease", I realized I had to face the least thing I want to know.
Diarrhea stared after a lot of antibiotics taken, when I was still a sophomore student in 2011 and began dating my first girlfriend. I thought everything was ok when the symptom was gone. Yes, it had been ok, until it came back in early 2012.
At the beginning, the only thing I cared was my career, and I was as hardworking as before(revising my thesis in a hospital bed and giving presentation during the interval of medical infusion). I never imagined a disease can change one's life so exhaustively. Bellyache, diarrhea, various complications and what's the worst, fear, make me suffered. Whenever I suffer from the physical symptoms, I fear more about my future sufferings.
There are only several in one million get this disease in China. I wondered many times, why me? None of my families or relatives have such disease. Why I am picked, to endure these and those? My future plan was smashed, I cannot pursue what I want as before, even cannot live as other common people.
Last night, I was in tears when I read the textmesseges from my ex-girlfriend. She recalled when she firstly had some feelings for me: it was a sunny afternoon, we met in the college, and she saw the 20-year-old guy smiled at her, smiled, like the warm sunshine.
I begged her to promise me that never forget the "me". I was healthy and optimistic, and believed I can do everything if I try my best...
 

Jennifer

Adminstrator
Staff member
Location
SLO
Hi DavidXU and welcome to the forum! :D

What sort of treatment do you have right now for Crohn's? With the right treatment for you (I say that because there's no one treatment out there that works for everyone) you can go into remission and go back to the person you were only much wiser. From what I found on this forum is that members learn so much about their bodies and how to get proper care and become more compassionate and understanding towards other people after dealing with an illness.

It is possible to go to school, work, meet someone, start a family etc. after being diagnosed with Crohn's. The first step is diagnosis then treatment. Feel free to check out other people's success stories on how they went into remission here: http://www.crohnsforum.com/forumdisplay.php?f=72

Keep us posted on how you're doing. :)
 

kiny

Well-known member
Hello, don't give up your dreams for this disease. You can still do everything, life just becomes a bit more complex at times. Don't worry too much and keep going.

Your English is really good btw.
 
Thank you Kiny.
But my doctor strongly recommend me lower my life goals. I don't have luxurious dreams about "crazy youth" like my peers. I planned to pursue a phd in certain decent university, and have a challenging career. Now it is not quite realistic. Even my medical costs became burdens of my parents.(we don't have insurance systems as good as yours)
Fortunately, I feel relieved for what I experienced in my short life, before diagnosed, such as traveling around Europe, giving academic presentation in the US, and having my first paper published. At present, maybe the best strategy is to secure a life path with less volatility.
 
Hi DavidXU and welcome to the forum! :D

What sort of treatment do you have right now for Crohn's? With the right treatment for you (I say that because there's no one treatment out there that works for everyone) you can go into remission and go back to the person you were only much wiser. From what I found on this forum is that members learn so much about their bodies and how to get proper care and become more compassionate and understanding towards other people after dealing with an illness.

It is possible to go to school, work, meet someone, start a family etc. after being diagnosed with Crohn's. The first step is diagnosis then treatment. Feel free to check out other people's success stories on how they went into remission here: http://www.crohnsforum.com/forumdisplay.php?f=72

Keep us posted on how you're doing. :)
Thank you Jennifer.
It is really invigorating to see words "remission for 14 years and counting"! I have been taking Mesalazine pills for 10months. Some doctors thought I got UC, but new colonoscope result shows it looks like CD more. The inflammation have been active for 1 year since the last blast. The doctor is considering add some azathioprine, but I worried about the side effects.
 
Hello!

Don't be frightened of trying something like azathioprine. I resisted it, too, but after a flare I couldn't get onto it quick enough! I'm now currently stable and getting on with life as I did pre-Crohn's. It is now common practice for doctors to treat Crohn's more aggressively in order to get on top of the disease before too much permanent damage is done to your body.

Don't let this disease change your life plans. Just adjust them to fit better. I have started a new college course (at the age of 42) and am starting on what will hopefully be a new career for me. I now just make it clear to others that I refuse to push anything to a point where it will be stressful as I know that makes my condition get worse.

A very good book to read is 'The Foul Bowel' by John Bradley (I think he also has a blog) - and in it he describes his journey with Crohn's, but also about how he adjusted his career to cope with the various challenges that Crohn's throws at us.

It sounds like you are still in the early stages of coming to terms with having this condition, and everyone on this forum will be at various stages of this process themselves. You will also find threads on here with very uplifting and positive messages about the experiences that having a chronic illness can bring. It helps you to re-evaluate your life and prioritise what is really important - you may be surprised at what your own conclusions turn out to be.

I have a lady who does construction work on my house. Whilst plodding along in a career in management she became extremely ill. When she recovered she realised that she had never really been happy in her work and had always wanted to work in construction, so she retrained and is living her dream. If she hadn't been ill she may never have had the push that she needed to change her life for the better.

It will take time to get your head around things, but you will get there, and you will be a stronger person for it in the end. Keep in touch on the forum and you will find loads of support from people who know what you're going through.

Best wishes.
 
... my doctor strongly recommend me lower my life goals.
I'm sorry... but that makes me really angry. I was told at the age of 16 that I would never have a "normal" life (whatever "normal" is) and that I would also have to lower my life goals. I was even given a 50/50 chance of living at all at one stage. Well, I'm 57 now and I've had an active life... although I do admit I've had some low points, thanks to the disease.

Now, the disease seems to affect everyone differently, and it may be that I have gotten off quite lightly compared to some...

But...

It's not a good idea to make important decisions about your future life while you're at a low point with the disease. You need to see how treatment is progessing and how you are responding to it. When you are feeling better, and you will feel better.... then you can make some decisions about what you want to do in the future. It may even be that you will choose a path which is less stressful but which you will find entirely fulfilling, but you won't be able to think about such things clearly while you are in a hospital bed and suffering the worst symptoms.

I really hope you feel better soon.

Best wishes
 
I'm sorry... but that makes me really angry. I was told at the age of 16 that I would never have a "normal" life (whatever "normal" is) and that I would also have to lower my life goals. I was even given a 50/50 chance of living at all at one stage. Well, I'm 57 now and I've had an active life... although I do admit I've had some low points, thanks to the disease.

Now, the disease seems to affect everyone differently, and it may be that I have gotten off quite lightly compared to some...

But...

It's not a good idea to make important decisions about your future life while you're at a low point with the disease. You need to see how treatment is progessing and how you are responding to it. When you are feeling better, and you will feel better.... then you can make some decisions about what you want to do in the future. It may even be that you will choose a path which is less stressful but which you will find entirely fulfilling, but you won't be able to think about such things clearly while you are in a hospital bed and suffering the worst symptoms.

I really hope you feel better soon.

Best wishes
Thanks a lot. Perhaps I am still refusing to be a Crohn patient in my deep mind. Staying away from various food and drinks, no stressful(exciting) life, or flares. All the inconveniences in future are frightening me. So my problem can be a little psychological.
But I will try to get over it.
 
Don't lower your life goals.

Because crohn's is so much less common in China, make sure you do a lot of research to make sure you are getting the best and latest treatments.

There are so many inspiring people who have had IBD. Pro football players, hockey players, Senators, actors- the list goes on and on. John F. Kennedy had ulcerative colitis.

There are many new medications being developed. I had a Dr. tell us that he believes we will see a cure to this disease in our son's lifetime. Crohn's will change your life for sure but don't let it take away what your hopes are for your future. We felt the same way after our son's diagnosis. Give yourself some time to adjust, you will be just fine.

(((((Hugs))))))
 
Hi David, don't for one second think you can't accomplish amazing things, look up the magician "dynamo" he has crohn's disease, he's had it from a very young age, he is one of the worlds best magicians. I mention this because he never gave up on his dreams. Witj advancements in technology treatments are gettin better, and who knows, the more we find out about this condition the better the treatments will become and hopefully soon their will be a cure/multiple cures
 
Location
Missouri
David, that doctor was beyond wrong to say that to you. I was diagnosed while in college. I was a full time student who worked 40 hours a week to pay for my college. While it did take me one extra year to finish, I never dropped out, I just kept plugging along, my flares were almost constant then. But my GI never, ever, told me I would not live a "normal" life. All I ever seem to get from him was that I could do whatever I planned, I just might have to adjust things when in flares. So, I have always worked full time, I graduated college, married, had 2 children.
You will have your down times, when the disease and all it brings gets you in very low places. But....you WILL get to the other side of them, and you will achieve remission with the right meds, and learn to feel the disease coming on so as to get in check faster.
David, you can still have the life you want. It will just take some "tweaking" now and then....
 

Jennifer

Adminstrator
Staff member
Location
SLO
But my doctor strongly recommend me lower my life goals.
That's terrible! That's a bad doctor right there. Personally I'd want a new doctor treating me if that's the amount of knowledge and attitude they have. This disease is treatable and certainly isn't a death sentence.

My goal is to become a sculpture professor for college level students. So far I have my Masters Degree. Now I just need to get my artwork out there and become a little more well known before I can be considered for a teaching job (most want you to have 4-6 years of teaching experience but becoming a well known artist can get your foot in the door). I'm confident that we can both achieve our goals in life without having to settle or place limits.

Thank you Jennifer.
It is really invigorating to see words "remission for 14 years and counting"! I have been taking Mesalazine pills for 10months. Some doctors thought I got UC, but new colonoscope result shows it looks like CD more. The inflammation have been active for 1 year since the last blast. The doctor is considering add some azathioprine, but I worried about the side effects.
All medications have side effects, even Mesalamine. Mesalamine alone isn't really the best treatment out there for Crohn's disease. I used to take 6MP (very similar to Aza) for about 15 years and never had any side effects from it. Just because side effects are listed doesn't mean you'll get them all or any of them for that matter.
 
David, I agree with Clynn and Jennifer. They are absolutely right. Don't let anyone ever stop you from fulfilling your life's dreams and purpose. Only an idiot would tell you that it's not possible!:ymad:
When I found out I had Kidney cancer 3 and a half yrs ago. The word die never entered my mind. I never felt sorry for myself. I felt I could beat it and here I am, fine! You can do whatever you put your mind to and with a little help form the Big guy upstairs when you are overwhelmed! Bless you!!!
 
Hi David and welcome to the forums. I know this disease can really get you down but keep your spirits up and know that there are a lot of options to help you get better. I hope you can find a good doctor to help you. You can still be the healthy and happy you. :)
 
Amen to that! Your life is what you choose and you're only as happy as you choose to be under any circumstances. I found feeling sorry for me only made me depressed more!:confused2:
 
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